“It Seems Like a Bad Thing”: US South Asian Youths' Perspectives About the Use of Hospice Care

Abstract

Background

South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use.

Objective

This study explored US South Asian youths’ knowledge of, and attitudes towards hospice care.

Design

Qualitative study, using focus group discussions.

Methods

Thirty-six university students of South Asian heritage participated in ten focus group discussions. Data were coded inductively and deductively. Thematic analysis was performed. Disagreements were resolved through discussion.

Results

Participants were in consensus that if patients had an incurable, fatal condition, keeping them comfortable was important. Several participants were unaware of the terms ‘hospice’ and ‘palliative care’. After these terms were explained, most opposed hospice care for reasons of ‘desire for a normal life’, ‘cultural incompatibility’, ‘concerns about the hospice environment’ and ‘preference for home as the place of death’. Some were opposed to even home hospice fearing that it would continuously remind the family and patient about impending death. Concerns were also expressed about having a ‘stranger’ in the home to provide hospice care. One participant said she would support hospice use if it aligned with the patient’s values. Others cited financial reasons and quality of life as considerations in choosing hospice care.

Conclusions

Research is needed on culturally-appropriate modes of palliative care education and advocacy for South Asian populations in the US, especially youth, that are often the decision makers for the care of older family members.